Couple of things

Hello everyone, Jules here.

I slept last night. First time (properly) in about a year. No idea why. How odd, but brilliant.

Secondly, someone on the forum a little while back was talking about her friend asking her what she had been doing with her time recently and how she struggled to explain she hadnt really done anything. I know that feeling and that situation, i shy away from situations where i might be asked.

But, I wondered if others struggle (actually it makes me really angry) when every morning I am asked ' well what are you going to do today'. I always feel dreaadfully embarrassed and make the same lie that i have something important to do then if i have time i will do something creative. In actual fact there isnt anything urgent in my life - but, i quite like the quiet life.

Does anyone else have that question posed to them an how does it make them feel ? The anger stays with me for a few hours.

Kind regards



13 Replies

  • Hi Jules... For me that question always feels like a test... and I get this awful panic that there is some where I should be or something I should be doing...and it sends me running to check my calendar (wherein lies my life) ... but it never is related to that and once I realise, I can exhale and simply get about the business of doing whatever it is that catches my attention ...and holds it...

    and the holding my attention is important because too often I am distracted and things are left partially done as I am distracted and walk away to do something else...

    I used to be bothered that there was no sense of urgency in my life and no real sense of purpose but now, almost ten years on (I was shocked to discover I am only weeks away from the 10 year anniversary of my humpty dumpty day ) I am more content to drift through each day and having creative projects as my focus makes that drifting more bearable.

    Every now and then reality still comes crashing in around me and tries to crush me... but each time I survive to drift another day...

  • Hello Iforget

    That sounds just like my days, almost exact.

    For me it was 5 years, 6 years this October. But just this afternoon i walked into the living room and felt a bit of shock as i realised i must have hit my head 'it must be true then' i thought, then banned the thoughts from my mind.

    I get the reality crashing in thing too - usually its stress from the family arguing or worrying about some forthcoming medical. Normally its people being stressed around me.

    By the way, he asked the very same question again this morning, i thought of the conversation on the forum and for the very first time i told the truth. i replied, i have no idea what i am doing today, probably nothing. to my suprise he just accepted it and the world didnt end.

    Odd aint it.



  • There's only my family who're interested in what I do. And they know me well enough that when asked what I'll be doing today I'm almost certainly going to reply 'Mm.......nothing much'............which is my way of saying 'I don't know yet : I haven't decided how I feel : I might do this, or that, or the other.............I'll see'.

    But I'm invariably chastised for doing too much as, though I might not start 'til 2pm I'll still be beavering away at 7pm, not bothering to notice I haven't eaten. It's what I do ; rest in the mornings, work when I'm able, eat when I'm hungry and stay up too late, with only mild, good humoured censure to fear. I'm lucky in that respect I suppose.

    Are you sure you're not imposing these guilt feelings on yourself Jules because you feel you should be doing more ? I got the impression your husband is very supportive and protective of you. I know you're always looking for 'projects' but have you given any more thought to a creative course at your local college ? xx

  • Good evening Cat its Jules here.

    Yes thats it. Its because i havent decided what i am going to do with my day when he asks me in the morning. I seem to do more in the later afternoon/evening too. I was honest with him this morning and everything was fine, i felt ok ish with it. Yes, he is very supportive ( that means 'most of the time' like most men) .

    I dont have the confidence for college, yet. I went on a sausage making course 2 years ago and came away embarrassed and humiliated. Would be funny if it wasnt true. I used to do correspondence courses while i was working full time (pre accident). Maybe i will think about it again.

    My most recent project was a gargoyle corner in the garden under the tree by the pond. i am quite happy with it, it looks spooky at night.




  • I have a couple of gargoyles in my garden too ! I love them.

    Most of my days are spent in house or garden (except Tuesdays when I visit my sis-in-law) and I don't feel like I'm missing out.

    Today I've cut my hedges (about 50ft) and I'm aching all over now, but showered and satisfied that my most hated job is out of the way for a good while. More importantly, it looks good when I look out the window.

    Do whatever makes you feel happy in your own skin Jules ; and perhaps your man is only asking what you'll be doing to check that you'll be ok whilst he's at work.

    Take care m'dear. xxx

  • Hi Cat

    Yes, i get a strange kind of peace sitting next to the gargoyles in the garden, especially with the sound of water in the ponds. Gargoyles seem pretty confident things and not too worried about what people might think they are. Oddly beautiful arent they.

    I upset my little sister a couple of weeks ago, otherwise i would see her about once a week, she works for the same place as me. My old friend i see every few months, but since the accident things have felt very different between us, my fault, i cant connect face to face. I love her dearly thou. Grew up together, did everything wrong together, like you do when you are kids !

    You are most likely right about the man in my life, he is a diamond. Its funny you mention your loathed task with tall hedges - he has been doing exactly the same recently, he too is proud of the height of them thou.

    Chat again soon.




  • With my fluctuating condition it is all too easy for me to put myself under that sort of pressure; come on, it's a 'good day' - what are you going to 'do' with it?

    But I can relapse suddenly after weeks of being physically active and cognitively on top of things into being unable to walk, brain-fogged and permanently exhausted. This means I have come to accept that what I do day by day must be set at the lowest common denominator of my capabilities - or be able to withstand the fact that I might suddenly have to dip out.

    And that has helped me to see that actually I am just as valuable when I am up and about and can be busy-ish as when I am unable to get out and living life in 40 minute chunks. As I tell my two boys what is important isn't always the end result but how you felt and how you tried while getting there.

    Was my life of more value in the days when the response would have been 'I am going to leave here, get to the office an hour early, spend every hour there in back to back meetings or Committees, come home and throw on a pan of pasta, feed everyone and get them to bed then get the laptop out'? It accrued more financial value as that's the way the world spins.

    But I am not sure it was truly worth any more than a day where the answer will be 'I will get out of bed to make sure I see the boys before they go to school. I will sit and talk to them whilst my husband makes their breakfast & ensures they have all they need. I will go back to bed and rest, before getting up and doing something quietly mid-morning. I will then rest again before eating the lunch my husband has prepared and chatting with him. I will then rest .... etc.'

    Turning it on its head I know which life I value more. And it isn't the one with the big paycheque.

    So as long as I get up and 'do' something - even if it is only half an hour of speaking to someone I love, which in a time of relapse it might be, I feel that is a perfectly justifiable answer to the 'what are you going to do' question.

    Congrats on the sleep btw. Envious or what!!!

  • Hello there Malalate, jules here

    The 'what are you going to do today' question.

    What a lovely way to describe it - especially the 'chatting' with your husband, who, like mine, seems to care a great deal.

    Good on you lass, keep taking time to 'smell the roses'.

    Kind regards



  • Hi Jules

    Thank you for posting this. Every day when hubby goes to work he comes back home and asks what I have done with my day and the look of disappointment in his eyes when I own up to very little is a killer.

    I know he is trying to encourage me, but often I feel crushed. I have not chosen to be at this point in my life and for my own self belief and sense of self I have to be honest I simply go quiet and reflect inwardly - I know I have done the best that I can today. Which is the truth.

    Like you Jules I am inwardly angry that my actions or in-actions as seen by others is judged, not harshly you understand ,but nonetheless judged.

    Jules know that you are not on your own with this and I am sure that many of us go through the same kind of emotions and feelings in responding to our relatives and friends. I am 100% with you, the quiet life is for me at the moment and that in itself I feel deeply is helping to heal me.

    The person I am has always tried very hard to look at a situation from anothers point of view, but if I am honest I am not as good at that as i was before my illness. I have become more self aware, dare I say it a tad more selfish. But hey what's wrong with that - this is my life,I have only got one life and if getting older(and ill) has taught me anything it has taught me the years go by (quickly) and if I don't value myself and my needs I am sending out a huge message to others that I don't matter. If nothing else my recent illness has opened my eyes to this and the importance of valuing myself - what a gift!

    This is an important lesson for me as prior to my illness I did voluntary work, which I hope to return to some time in the future. But my thinking is (triggered by your posting) how can I help others and be kind, helpful and supportive to others, which I hugely enjoy if I cannot be kind and supportive of myself. So if like me you need a quiet life take it and embrace it.

    Gosh listen to me. I am on a right rant. Thanks Jules for stirring this passion in me it feels gooood!

    Well done to you - having a good sleep.May many more come your way.

    Take care of you

    Clare x

  • Oh Clare, that nearly made me cry when i read your words about his eyes. And I know what it does to your heart inside.

    But, it does seem everyone has had, is having or is going to go through all these various stages, thats why the forum is so needed. Hugely valuable tool, for people like me. to be able to 'talk' to people like you.



  • I used to get upset by that question but now I just try to let it go right over my head...I usually say, oh I've not decided yet, I'll see what I feel like later! I describe it to my husband and a few close friends as having so many morning I can wake up and have say six spoons, then by just showering I can be down to two, so I rest and only do what I have to do, I always motivate myself to cook/clean the house tho...even if I have run out of spoons! Some days I can have enough spoons to do what everyone else does in a day and other days I can waken and know that I need to preserve the spoons to get me through the day. My friend even calls and asks if I have enough spoons left to go with her to the supermarket haha...may sound so silly to some but the spoons description works for me! I'd never try to explain it to certain other family members or friends but I know a lady who has brain injury through medication prescribed to her in another country and it was her that explained to me that the best way to get others to understand how you feel some days compared to others is by using the spoons method! I had no idea what she was meaning but now it makes perfect sense! She said she is able to tell her husband in the morning how many spoons she has wakened with and say for example he wants her to go out that evening....she does nothing all day to save her spoons(energy) for later! I def refuse to get upset by others asking that....I'm like Cat in the sense of.....I take a while to get with it in the morning and then I go full steam ahead and forget to even eat until I think oh dear my husband will be home soon, time to make tea, when I haven't even stopped for lunch....I do think we are very hard on ourselves and over think what others are actually asking! Take care and let that question go right over your head, or maybe answer with....I have one or two things I could be doing but I've not decided yet! ;)

  • Hello Peaches

    Yep, that was a brilliant idea with the spoons, he will 'get it'.

    On my wall here by my computer i have a laminated A4 white sheet of paper with 3 circles with Velcro on so i can stick them on a 'traffic light' stack. the colors are red, amber and green. If i have no spoons, i stick the red at the top, if i have a full drawer, the green. Its simple and to my suprise he uses it (well used to). So i might now refer to the spoons see if that helps.

    The other problem with the traffic light is sometimes i use all 3 colors at once at different levels, well - its the way i feel at that time.

    Lovely talking to you peaches.




  • Simple answer from me, Jules : ) I'm doing as much as I can manage, slowly and with rest breaks ! This may not be much, compared to what I did yesterday, since I need quieter days between the busier ones : ) x

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